My condition will lead to me being a quadriplegic. Advice?
It’s been a rough three months. I’ve had stenosis, a narrowing of the spinal opening, for a decade, but it started pinching my spinal cord about three months ago while on a trip to Peru. Since September, I’ve gone from slight pain in my legs to severe pain in arms and legs, loss of feeling, and loss of strength upwards of 80-90%. I can barely walk with two canes as my legs buckle regularly. Unstopped progression ends with me a quadriplegic.
The orthopedic surgeon in Albuquerque says I need surgery quickly to stop the progression but I may not recover any lost function, although with the quick onset of problems means recovery of function is more likely.. I sent my MRI to Mayo Clinic in Phoenix and I’m looking for a second opinion and possible surgery there. We’ll see this week how fast Mayo Clinic can move on this. I’m failing quickly and if no relief is forthcoming, then motorcycles, surfing, and drums are over and that makes me depressed. Trying to hang in there, I am. The Yule brings hope of lengthening days and I see this as hope of better days ahead. I did get an epidural Tuesday and it helped. Just trying to get some relief until a procedure.
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Hi Bill, I can relate well to your alarming condition. It's not just the pain and disability, but the loss of being able to do the things you have been doing so long that once gave you joy, release from stress, and a feeling of connectivity with the world around you that becomes nearly unbearable. I have experienced the same and the feeling is of deep loss, sadness, and frustration with the once so capable body that we took for granted and now won't cooperate with us no matter how nicely we treat it. I've been dealing with it for over 10 years now and here is what i have done to stay out of the OR so far, other than 2 stem cell treatments this year. I can't go back to (small) boating (bouncing over waves is horrible for the spine), martial arts training, and landscaping, but i can walk and talk and brush my hair. The little things take on new appreciation when we lose them.
First, get 3 opinions from drs who dont know each other and conduct their own MRIs. I consulted 4 myself. It's astonishing how they sometimes have completely different opinions and remedies. If at least 2 of those opinions/remedies are the same then consider more deeply.
Second, get into physical therapy with a DR of physical therapy who specializes in sports and accident injuries and do absolutely everything they teach you with mindfulness to firm at least 4 dats a week for a year before you get surgery. The human body is a remarkable machine capable of healing itself. I straightened a 27 degree lumbar scoliosis with 4 bulging discs and sclerosis filled sacroiliac joints with just physical therapy exercises and diet. No surgeries there.
Third, get on an ultra clean high nutrition diet. The body cannot heal without good nutrition.
Fourth, stay off the meds as much as possible. Inflammation and the pain that goes with it is the bidy working to heal itself.
I hope these suggestions are doable for you. If you want further details, find me on MySpondylitisteam.com. Same moniker, "Pitac". Im sure this is a great site, but i only just joined it and that other one has over a year of my wholistic healing approaches to managing my "paying for the playing" with a topping of autoimmune arthritis. I try to keep a sense of humor on the predicament. I call it "Ageitis with a dose of ohshitosis" 😄. I have multiple old injuries with Psoriatic Spondylitis axial peripheral bilateral thrown in, a real party on the body😝. Anyway, there are thousands of folks with spine problems on that site, not all of which are related to cancer. Hang in there my friend. It's not all over for you unless you want it to be. There are loads of things you can do to regain most, if not all, function. My MRIs look and sound scary too, but you CAN adjust and it CAN get better.
Happy New Year Bill, believe it or not, it really can be your best year yet. Cheers🙏😌🎉🤙
You're welcome Bill. I should have mentioned I made a full recover after my fusion. Took about 8 months to get there but as mentioned I didn't have severe leg weakness. I see a post recommending 3 opinions and normally I would agree. In your case with severe paralysis, if the first 2 opinions are basically in agreement I would forego the 3rd opinion unless you can get it very quickly. I don't think it is practical or necessary to get 3 different MRIs. Hopefully Mayo will
come through fast. I
don't know how they
operate but I would
stay on top of them. Hang in there and please do keep us
posted.
Thanks for your insight and encouragement. I appreciate you taking the time and effort to respond and share your experience. I am indebted. Happy New Year.
Happy New Year to you also Bill.